Consumer Genetic Testing: The Promise and Dangers
Many of you may be aware that the Golden State Killer was recently found and arrested, but what you might not know is how. In an unorthodox turn of events, authorities used DNA evidence found at the crime scenes to construct a means of finding the killer. By comparing said DNA to genetic records found online, law enforcement were able to find biological relatives, in turn using this novel information to find the exact location of the killer. The arrest amounted to the end of a forty-year search and a belated, though important, victory for officers who worked with the case for decades. But what does all this have to do with consumer genetic testing?
The answer lies in the genetic records I mentioned earlier. Those records were the results of information consumers paid to have compiled through one of many tests offered by consumer genetic testing companies (learn more about the consumer genetic testing industry here), and are located on the public domain. As such, these records are freely accessible to law enforcement -- not to mention third party companies, albeit under certain special circumstances. Regardless, this should be a cause for concern. It seems to be an egregious breach of information when knowledge of our basic biological building blocks can be analyzed by complete strangers, all without our permission.
The indiscriminate examination of our genes, by the government and corporations alike, has not yet come to pass. Of course, leading companies in the consumer genetic testing field, such as Ancestry.com and 23andMe, have prided themselves on keeping users’ genetic data safe and are only willing to divulge personal data in the event of a court order. However, privacy should still be of the utmost concern when dealing with our genes, and it is worth taking a long, hard look at who keeps our data and whether we have relinquished private ownership through testing. As is often the case for powerful technologies, genetic testing is a double-edged sword; it can be great for law enforcement, but it can also represent privacy concerns. As for now, we have only scratched the surface of the fascinating field of genetic testing.
Looking towards the future of genetic testing reveals impressive promise and shocking opportunities for misuse. Foremost among the benefits is the boon genetic testing provides to healthcare. Imagine a future in which we were informed, even before birth, of what allergies children have. We could create drugs designed on a per-patient basis, and parents-to-be can make more accurate, informed decisions surrounding conception, which is especially important if they are disease carriers. There are also non-health related benefits such as finding long-lost relatives through advanced genetic ancestry analyses. Each of these examples, along with a host of others, showcase the tremendous power the technology and industry have to create positive change in society. Not to mention, the masters of this technology will certainly be reaping profits for their business.
Of course, there also exist a slew of problems with the future of genetic testing, mainly regarding the simplification of decisions from genetic coding. Imagine another future: people being rejected from life insurance or jobs on the basis of a predilection towards developing a fatal disease; school districts offering advanced learning opportunities only to young children whose DNA indicates a higher IQ; and a growing social stratification as the wealthy test embryo after embryo in the pursuit of a desire to manufacture the best baby- one that will have the best genetic advantages that money can buy. This future seems full of ethical quandaries, and like the one before it, is also technologically possible.
So what do we do about any of this? For starters, we can take a deep breath and realize that the “bad” future is in all likelihood many years away- and hopefully is entirely preventable. The current consumer genetic testing industry is largely benign, with a few charlatans here and there. But as I mentioned in my previous article, it is only just beginning to launch. This technology will likely shape all of society. We owe it to ourselves to keep a close eye on it, and to be actively invested in regulations and guidelines, or lack thereof, which can shape its future. Let’s not let technology outpace moral thought. Instead, let’s take time to think of the consequences of genetic testing technology -- both the good and bad -- and then act on our values. Many of the companies involved have already invested great effort into these lines of thought, and those which haven’t certainly should- but this author is hesitant to leave the situation entirely in their hands. It’s time for the consumers step up.